Reading up on all the news, reports and discussions on the aged care royal commission, it makes me wonder if personhood is forgotten in dementia care. Recognition, respect and trust is not rocket science and that’s just common sense. What’s happened to aged care? Why is it that people living with dementia are now being objectified, disrespected and feared in aged care. How did we go so wrong?

I hope in a decade when I look back on this post, the world will be a better place for people living with dementia, especially for women.

Jumping into the facts, a study evidently points out that in Singapore, 97% of caregivers for people living with dementia were female; comprising of daughters and daughter in law’s.

In the aged care sector, the workforce comprises of mostly women. In some countries up to 80%.

Our biological differences have seen more women then men living with dementia, and dementia being the leading cause of death for women.

For many of us women, we may be living with dementia, be the primary support for a loved one with dementia or working to formally provide care to a person living with dementia.

It’s important that we support each other and work together to educate the next generation, reducing traditional gender roles to enable more opportunities for a cure as more women move into STEM. Recognise the efforts and responsibilities of women taking on caring roles within the family, one that is of love, patience and pain as they live the long goodbye. Let’s not forget the many care staff in the aged care sector that have been working on minimum wage, understaffed and running off their feet, yet always having a warm smile and love for the people living with dementia that they care for.

Last month the aged care minister Ken Wyatt announced he would introduce regulations to address the use of “chemical restraint” in residential aged care – a practice where residents are given psychotropic drugs which affect their mental state in order to “control” their behaviour.

Psychotropic medications used as “chemical restraints” are antipsychotics, antidepressants, anti-epileptics and benzodiazepines (tranquilisers).

Wyatt followed this announcement this month with a A$4.2 million funding pledge to better monitor care in nursing homes through mandatory “quality indicators”, and including one covering medication management.

Of course, you would be hard pressed to find a staff member admitting to controlling a resident by giving them a tablet. Instead, most staff would stress that medication was given to calm or comfort them.

But our research shows psychotropic use is rife in Australia’s aged care system.

Reforms are desperately needed, but we need to develop the right approach and learn from countries that have tried to regulate this area – most notably the United States and Canada.

What’s the problem with antipsychotic drugs?

Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.

But large reviews conclude they don’t work very well. They decrease agitated behaviour in only one in five people with dementia. And there is no evidence they work for other symptoms such as calling out and wandering.

Due to their limited effect – and side effects, including death, stroke and pneumonia – guidelines stress that antipsychotics should only be given to people with dementia when there is severe agitation or aggression associated with a risk of harm, delusions, hallucinations, or pre-existing mental illness.

The guidelines also state antipsychotics should only be given when non-drug strategies such as personalised activities have failed, at the lowest effective dose, and for the shortest period required.

The high rates of antipsychotic use in Australian aged care homes indicates the guidelines aren’t being followed.

In our study of more than 12,000 residents across 150 homes, we found 22% were taking antipsychotics every day. More than one in ten were were charted for these drugs on an “as required” basis.

We also found large variations in use between nursing homes, ranging from 7% to 44% of residents. How can some homes operate with such low rates, whereas others have almost half their residents taking antipsychotic medications?

Regulations to reduce chemical restraint

Of all countries, the US has made the most effort to address high rates of antipsychotic use.

After reports in the 1980s highlighting poor nursing home care, Congress passed the Omnibus Budget Reconciliation Act which sets national minimum standards of care, guidelines to assist homes to follow the law, and surveyors to enforce it.

For residents with dementia and behavioural symptoms, the regulations require documentation of the behaviour, a trial of non-drug strategies such as activity programs, and dose reductions after six months.

Homes that don’t meet these regulations are subject to a series of sanctions, ranging from financial penalties to closure.

The regulations were initially associated with substantial declines in antipsychotic use. By 1995 only 16% of residents were taking them.

But average rates of use rose to 26% by 2010. And in 2011, a Senate hearing found 83% of claims for antipsychotics in nursing homes were prescribed for unlicensed use.

This led advocates to conclude the regulations and surveyor guidance were ineffective.

Quality indicators to reduce chemical restraint

Another way to reduce antipsychotic use in aged care homes is by mandatory quality indicators, along with public reporting. The US introduced this in 2012. A similar system was instituted in Ontario, Canada, in 2015.

Measures are essential for quality improvement. But they can also lead to unintended consequences and cheating.

In the US, antipsychotic rates for people with dementia has allegedly reduced by 27% since the start of their quality indicator program.

But those diagnosed with schizophrenia were exempt from reporting. Then the percentage of residents listed as having schizophrenia doubled from 5% to nearly 10% of residents within the first few years of the initiative. So 20% of the reduction was probably due to intentional mis-diagnosis rather than an actual decrease in antipsychotic use.

A recent US study has also shown that the use of alternative sedating medications not subject to reporting, specifically anti-epileptic drugs, has risen substantially as antipsychotic use declined, indicating widespread substitution.

In Ontario, the use of trazadone, a sedating antidepressant, has also markedly increased since its antipsychotic reporting program began.

Public reporting is often also time-consuming, with some researchers arguing that time spent managing quality indicators may be better spent providing care for residents.

Where to now?

Awareness of a problem is the first step to addressing it, and chemical restraint is a key issue coming to light in the aged care royal commission.

The proposed regulations and new quality indicator will allow homes and regulators to monitor the use of chemical restraint, but more importantly, should be used to assess the impact of training and other strategies to ensure appropriate use of psychotropic medications.

But to meet their full potential, these programs need to be carefully designed and evaluated to ensure that cheating, under-reporting and substitution does not occur like it did in North America.

Many caregivers in Asia can agree, it’s super hard to find resources and in some countries, it’s hard even to know where to start. When we go online there are so many websites and resources, it’s hard to even know where to start. It’s hard especially when a lot of information tends to be advertisements for private organisations promoting their services. When this post from Monica Cations post popped up on twitter, it was like, wow, what a great idea!

Let’s have one for countries in Asia. The list is below is one for Asia, and if you wish to view the full list of organisations, you can visit https://www.alz.co.uk/associations

New research shows that a comprehensive, coordinated care program for people with dementia and their caregivers significantly decreased the likelihood that the individuals would enter a nursing home. The study also shows that the program saved Medicare money and was cost-neutral after accounting for program costs.

The research, conducted at the UCLA Alzheimer’s and Dementia Care Program, was designed to evaluate the costs of administering the program, as well as the health care services used by program participants, including hospitalizations, emergency room visits, hospital readmissions and long-term nursing home placement.

“The findings of this study show that a health care system-based comprehensive dementia care program can keep persons with dementia in their homes and in the community without any additional cost to Medicare,” said the study’s senior author, Dr. David Reuben, Archstone Professor of Medicine and chief of the UCLA Division of Geriatrics at the David Geffen School of Medicine at UCLA.

The research focused on the UCLA Alzheimer’s and Dementia Care Program. In the program, people with dementia and their caregivers meet with a nurse practitioner specializing in dementia care for a 90-minute in-person assessment and then receive a personalized dementia care plan that addresses the medical, mental health and social needs of both people. The nurse practitioners work collaboratively with the patient’s primary care provider and specialist physicians to implement the care plan, including adjustments as needs change over time. A total of 1,083 Medicare beneficiaries with dementia were enrolled in the program and were followed for three years. The study compared them to a similar group of patients living in the same ZIP codes who did not participate in the program.

“The most striking finding was that patients enrolled in the program reduced their risk of entering a nursing home by about 40 percent,” said lead author Dr. Lee Jennings, assistant professor at the University of Oklahoma College of Medicine. Jennings began the project while on faculty at the Geffen School and finished it after arriving at Oklahoma.

There were no differences between the two study groups in hospitalizations, emergency room visits or hospital readmissions. However, cost was another important element of the study. Participants in the program saved Medicare $601 per patient, per quarter, for a total of $2,404 a year. However, after program costs were factored in, the program was cost-neutral and might result in savings in other settings, such as at other health care systems. That was good news to the study’s authors.

“We found the study to be very exciting,” Jennings said, “because it showed that an intensive intervention can delay nursing home entry without adding costs. The intervention isn’t going to reverse dementia, but it allows us to provide high-quality care to help patients cope with the progression of this disease and stay in their homes for longer.”

Jennings added that individuals with dementia typically have not received good-quality care. “Part of the reason,” she said, “is that the care takes a significant amount of time, which primary care physicians don’t have in abundance. In addition, pharmacologic treatments for dementia are limited, which makes community resources all the more important for both patients and caregivers. However, community programs tend to be underutilized.”

The intervention featured in the study addresses those issues directly. The assessment looks not only at what the patient and caregiver need, but also at their strengths, such as financial security, family assistance and proximity to community resources. It is designed to be interdisciplinary and to address the needs of both patients and caregivers.

“This study aligns with similar studies of collaborative care models for other chronic diseases, such as heart failure,” Jennings said. “It underscores that we need to be thinking differently about how we provide care to persons with chronic illnesses, like dementia. This study shows the benefit of a collaborative care model, where nurse practitioners and physicians work together to provide comprehensive dementia care.”

A brilliant article by Kate Swaffer and a must read. I have been saying this over and over again, having worked in imaging for a short while. MRI and procedures for scans are stressful and distressing. And the whole process of diagnosis is just a mind field for everyone.

In the last few weeks, there have been a few articles, blogs or tweets on the impact of others publicly doubting a persons diagnosis of dementia, which I am highlighting here for your weekend reading! One tweet by a professional last week claimed with certainty some people don’t have dementia. Whilst it didn’t name anyone, it was disturbing. I’m reasonably certain, in the same way people rally around someone diagnosed with cancer, they also never doubt the diagnosis, including when the person ‘does better than expected‘.

People with cancer (or any other ‘mostly invisible’ diseases) are never diagnosed or doubted publicly, including by others after a conversation, presentation or after reading a book or blog. I can never tell who in a room has heart disease, diabetes, and in the early stages of conditions such as multiple sclerosis, and even Parkinson’s. It is the same for people with dementia as…

Up to 80 per cent of community care for older adults is provided by unpaid informal caregivers. In the absence of government supports, many of them struggle with exhaustion, stress and depression.(Shutterstock)

Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.

Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.

Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.(Shutterstock)

While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.

Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.

“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.

Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.

Web-based supports can help

We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.

One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.

We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.

The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.

Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.

Nova Scotia leads the way

Caregiving comes with costs to the caregivers — to their health and to their finances.

Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.

Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.